Community Fellows Pilot Program

Whether it happens in the lab or the clinic, ALS research provides hope to a passionate community with an urgent need: to see treatments that change the reality of living with the disease.

Canada is well-respected as a global leader in ALS research discovery and is fortunate to have a thriving ALS research community that meets annually at the ALS Canada Research Forum to learn, share information, and collectively advance progress toward a different reality for people living with ALS.

For the first time, we are pleased to be welcoming people living with ALS and caregivers to the research forum in the capacity of Community Fellows as part of a pilot program. Congratulations to the inaugural cohort, who were selected following an application and evaluation process.

2021 Community Fellows
Todd Bertamini
Chris Beaton
Yousif Eliya
Ray Freebury
Deane Gorsline
Esme Hogeveen
James McKinnon
Cali Orsulak
Miralda Reyes
Paula Trefiak
Bert Van Hoeijen
Christopher Van Hoeijen
Jody Wizniak

Thank you to Cytokinetics for sponsoring the inaugural Community Fellows program.

FAQs

Up to 15 spots are available for Community Fellows. Households with more than one family member interested in being a Community Fellow must submit a separate application for each individual.

Applicants must:

  • Live in Canada
  • Have a personal connection to ALS (i.e. living with the disease or a current or former personal caregiver to someone living with ALS)
  • Have access to a device with internet connection and webcam and the ability to engage via chat functions etc.
  • Be available to attend the virtual ALS Canada Research Forum on:
    • Wednesday, April 28 – 12:00 – 6:00 PM ET, and
    • Thursday, April 29 – 12:00 – 6:00 PM ET

The ALS Canada Research Forum is a scientific conference attended by researchers and clinicians who are presenting information to an audience of peers. Applicants for the Community Fellows Pilot Program do not need a formal scientific background to be considered strong candidates – a general appreciation for basic and clinical research is fine. That said, much of the content being presented is highly technical. You can view the draft program here.

  • Learn more about the breadth and focus of ALS research underway in Canada and connect with the people leading it.
  • Hear from some of the researchers deeply invested in understanding ALS and contributing to the development of effective treatments.
  • Connect with other ALS community members with an interest in research.
  • Complimentary registration for and access to the virtual ALS Canada Research Forum. See the draft program here.
  • A comprehensive package with background information to read before the event.
  • Your name acknowledged during the event and/or in event materials and on the ALS Canada website as participants in the Community Fellows Pilot Program
  • Opportunity to attend a pre-event virtual social gathering to connect with other Community Fellows and learn more about the ALS Canada Research Program
  • A valuable experience with others affected by ALS and ALS researchers from across the country.
  • Opportunity to engage in conversation with other fellows and ALS researchers and contribute through Q&A and chat functions during the event.

The Community Fellows program is a pilot project that ALS Canada is offering for the first time. To help you think about whether this opportunity is something you would enjoy, here are the things you would be asked to do if your application is successful:

  • Represent the voice of lived experience: Community Fellows bring their lived experience and expertise to this meeting, which is primarily aimed at the basic and clinical research community.
  • Bring a well-rounded appreciation for the role of different kinds of research in scientific discovery: From laboratory research in animal models to clinical research with patients, all aspects of scientific discovery are essential in developing treatment and improving quality of life.
  • Respect the research process: As is standard for a scientific conference, Community Fellows are asked to respect the confidentiality of the information being shared and to refrain from taking or sharing screenshots or pictures of any of the presentations on social media or directly with others.
  • Inform others in the ALS community: Fellows are asked to provide a brief (200-500 word) summary of their impressions and experiences of the ALS Canada Research Forum. ALS Canada will share excerpts of these summaries on our blog and social media. Other Community Fellow-led communications about the meetings (e.g. social media) that respect the research process are also encouraged.
  • Engage with other attendees: The ALS Canada Research Forum is a virtual event that offers chat and Q&A functions as an opportunity to engage with the scientific community and other attendees. Community Fellows are encouraged to use these tools to engage with other attendees in relevant and respectful discourse. Community Fellows will also have the opportunity to attend a pre-event virtual social gathering to connect with other Community Fellows and learn more about the ALS Canada Research Program.
  • Inform the evolution of the Community Fellows program: This is a pilot program that is being offered for the first time. Fellows are asked to provide feedback to support ALS Canada in assessing an ongoing Community Fellows program. Feedback will take the form of a survey as well as a post-event debrief to dig into some of the themes that surfaced in the survey.

It is important that the research community hears directly from people who are personally affected by the disease. The program includes two sessions where people living with ALS will share their experiences and perspectives.

Applicants will be notified by email on or before Friday, March 19 if they are selected to be one of this year’s Community Fellows. Successful applicants will then confirm their attendance by email.

Unsuccessful applicants can attend the conference by registering for general admission.

All content for the ALS Canada Research Forum is delivered in English, as is standard for most scientific conferences.

Please contact research@als.ca with any questions.